Sunday, July 17, 2016

ONE MORE DAY! (but a lot in between)


So we are super excited because tomorrow is the last day of Brian's 15 days of whole brain radiation. This process has required us to get up early every morning and drive an hour, then treatment takes no more than 20 minutes only 5 of which is actual radiation, then an hour drive home. Most days Brian would then hop in his car and go to work.  Like everything, Brian has handled this pretty well. He has had some fatigue and a few other things but overall not as terrible as we expected.  We have great rescpect for people who have treatment for 45 days straight!

Here are some things that have happened in between.  Of course we never do one thing at a time. So Brian started Yervoy (the new immunotherapy) then not long after started the whole brain radiation.  Immunotherapies are designed to teach your immune system to attack the cancer cells. So instead of tearing your body down, it vamps the body up. Two common side effects are colitis (stomach issues) and endocrine issues. Two weeks after his first infusion of Yervoy and one week into the brain radiation, Brian got super sick. We will call is stomach issues but that only touches the surface. After getting IV fluids and taking one day of steroids, luckily he got better.

Another thing that happened as Brian started radiation is that his eyelids became puffy, his eyes were dry, and he had cloudy and blurry vision.  He was also seeing double when looking far right and far left. We just assumed it was from radiation. While at one of our check-ins with the radiation doctor during the treatment, she said the eye issues weren't something common with radiation. Now because of the stomach issues, the fatigue, and the eye issues, the radiation oncologist also wanted us to meet with the oncologist.  Our favorite, Dr. B is out of town so we meet with his Physician's Assistant.  . Anyways, she said many of Brian's symptoms could be a mix of Yervoy and radiation but wanted to get some bloodwork just in case. She also led us to an ophthalmologist. This eye appointment went well. The doctor said these are common issues for someone who has had radiation and chemo and immuno. Basically the meds attack things that grow quickly like your hair but also your tear ducts.  Brian wasn't producing any moisture. He was prescribed some steroid eye drops and he is already feeling better.

Well on the way home from the eye doctor the PA called us with results of the bloodwork that we had forgotten we were even waiting for.  Guess what?! Brian has the second side effect of Yervoy, his thyroid is greatly effected. The normal number for a thyroid is between .5-4.5.  Brian's is 53!!  The side effects of hypothyroid are dry eyes, weak eye muscles, and you guessed it, FATIGUE!  So she wanted to prescribe Synthroid and a steroid. We are weary of steroids because they make Yervoy less effective which is not something we want. So after a quick talk with Dr. B (poor guy can't even get away from us while on vacation), we have decided to hold on the steroids and give the thyroid medicine a chance to kick in.  Brian will need to have more bloodwork in a few weeks to make sure the meds are work and we will most likely see our endocrinologist.

Did I mention that somewhere in the middle of ALL of this Brian was in a car accident where he was rear ended forcing him to bump two other cars?!?!?  Our paid off car was towed away and we are still waiting to hear if it is totaled. I was stuck on a sight seeing train with Harper with my car miles away when he called to tell me. Luckily no one was hurt, and friends came to the rescue to get Harper to school and me to my car so I could get to Brian.

Our ever eventful life continues to be full of twists and turns. Did I mention how excited we are that tomorrow is the LAST treatment day for whole brain!?!?! We will meet with the radiation doctor tomorrow to talk about when they will scan again to see how effective treatment was. Also as long as things go well with the thyroid medicine, Brian is expected to have his next immuno infusion on the 29th of this month.

God is clearly teaching me to live/survive through chaos and not have everything planned out.  Pray that Brian has no more stomach issues before the next round of meds.  We love you all! Thanks for being our village that keeps growing, loving, and caring for us!


  1. God has big plans for you both...I just feel it.

  2. Hi...I found your blog through Ronda Baer. My hubby also had whole brain radiation.He has had a problem with eye dryness, plus the puffiness. He also lost his eyelashes which did not help. Eye drops and antihistamines helped him, as did cucumber slices on his eyes. My prayer for you and your hubby.